← Return to Anyone take new drug Camzyos (mavacamten) for HCM?

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@joycehocm

Hi all - I am not replying to anyone in particular - can someone tell me how to just do a post without using "reply?" Meanwhile, I just got back from Hopkins and a consult with the cardiologist. I got diagnosed with HOCM about 6 months ago and have had a heart biopsy to check for amyloids and all the other typical tests. My stats are "average" for our condition. The doc put me on verapamil and jardiance and I have felt terrific since. I still have some breathlessness but my energy level is incredible. He says that unless the severity of my symptoms change - and they may not - I won't have to move onto Camzyos - which would be the next step in my case. I just wanted to let everyone know this because this protocol might help for others when Camzyos doesn't help or just when you may be waiting for a procedure. The breathless spells come most after eating so I'm hoping I can get a handle on them with smaller meals. I don't have any other symptoms now. Thanks all for your wonderful information, sharing and support!

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Replies to "Hi all - I am not replying to anyone in particular - can someone tell me..."

Hello @joycehocm,
Thank you for sharing that information. How often will you be monitored on this protocol?
In order to not reply to a post, I think all you need to do is instead of hitting the blue "reply" button at the bottom of a post, scroll a little further down and there is a "Comment" box. This is where you can post away without replying to another members post.
I'm glad to hear you are feeling so good, and surgery and Camzyos are on hold for now!

Eat smaller meals--try a smoothie (e.g. puree blueberries or strawberries (or other fruits) or even avocado, with something healthy like low fat dairy (yogurt, plant-based milk, orange juice, etc.) mid morning (10:30 am or so?). Light lunch with lots of salad fixings (avoid salt) use olive oil for dressing and--keep dinner light (avoid salt, sugar, flour, and oil, such as pastas, breads, fried stuff, cream sauces, etc. ( lightly steamed broccoli, brussel sprouts, cauliflower, cabbage) are very healthy, along with baked or grilled chicken or salmon. if you're still hungry before bedtime, have some a small smoothie (above) or a little oatmeal with berries or honey. This just might help with shortness of breath (SOB). Personally, and surprisingly, I also found that the more I walk or bike or swim, the fewer SOB episodes and papitations I have! I'm not a doctor--just another HCM patient.